Self-Determination Doesn't End as We Age

Author: Terry Lynch

We do not need to give up control over our lives as we grow older, we just need the kind of help that makes sure that we are respected and can still be ourselves.

“Your mother is custodial, Terry. It’s like baby-sitting.” The social worker’s chilling assessment was understandable, albeit demeaning. It was 1986. My mother, Leila Lynch, had just returned to our home from her second hospital stay in five months. She was battling dementia, osteoporosis, falls, fractures, congestive heart failure and periodic fainting episodes. It was then that my real education in “independent living” began. I had become my mother’s caregiver. The future looked bleak at best for both mother and son.

Fast-forward to 1995, the last year of my mother’s life. Leila (pronounced “Lee I Lah) had not been hospitalized for five years. I had been able, with lots of assistance, to help my mother enjoy a happy and fulfilling life at home in spite of considerable obstacles. She and I had overcome the life-wrecking stereotypes and “inevitabilities” that often govern assessments of what lies ahead for frail elders, especially for those with memory loss. Leila’s story - our story - had become an early, hopeful and instructive model of self-determination involving an older person with dementia.

I tell audiences that I see Leila’s story as an example of “evolving SDS” and emphasize that in many cases, with skilled and creative guidance, life for older people and their family caregivers can improve, even under daunting circumstances. It doesn’t have to be “self-directed decline” from the start.

Until her mid-70s, Leila had been vigorously involved in life in Wisconsin. She was raised in the western part of the state and was known as a “high-spirited girl” who rode ponies bareback on the family farm. At 21, she moved east to Racine to teach elementary school. (Racine is a medium-size industrial city located on Lake Michigan between Milwaukee and Chicago.) She met and married my father. When I was born, Leila stayed home to raise me.

Leila was an affectionate, energetic, creative, and hospitable mother with a strong sense of self. I later told her I had been raised by an early version of the liberated woman. She never lacked for things to do, projects to complete. “How could anyone be bored?” I was fortunate to have an entrepreneurial father (shoe store owner) who was very good to me too. We were a close-knit family.

When I began high school, Leila returned to elementary school teaching (fourth grade). She was widely considered a caring, dynamic and effective teacher. At 65 Leila moved on to a contented and active retirement with my father. After he passed away, Leila adjusted as well as one can and went on with life. In her late 70s, Leila’s strength and vitality began to erode. She had several injuries from falls. I convinced her to live with me during my last two years in Washington, D.C., where I held a federal government position.

Leila and I returned to our Racine home in 1985 and I started my independent living consulting business. She had remained relatively self-reliant while we were in Washington but shortly after we moved back to Racine more injuries and a rapid decline in memory stole Leila’s capacity to manage everyday life. She suddenly needed round-the-clock help. For most of the next ten years I lived most of my life in Racine - much of it in our home.

Our self-determined world

I had to help Leila through multiple medical crises before life settled down. I remember the first six months back home in Racine as the worst time in Leila’s life and in mine. If someone had asked whether I wanted to help Leila self-direct her supports, I would have said something along the lines of: “Please save our lives then talk to me about what that means.” It was trial and error for a while. Our story turned out well partly because Leila survived my mistakes, such as not noticing a medication error by a hospital pharmacy. Fortunately a nurse did.

I gradually became a tactically sound, and obsessively vigilant, advocate for Leila, which served her well throughout the rest of her life. A pivotal event—I took Leila to a geriatric assessment clinic. A physician determined that she had vascular dementia – dementia caused by small strokes − not Alzheimer’s disease. She was treated with anti-coagulant medications that prevented a disastrous decline. Although Leila still could not recall recent events and was unable to manage her life without assistance, she remained aware of her surroundings and recognized and interacted normally with her caregivers and friends. She remained Leila Lynch. When I would ask her how she felt about life she would tell me, “I love my life.”

Life at the Lynch home was at its best from 1987 until Leila passed away in 1995. She qualified for state-funded long term care in 1987 and we gradually built our long-term support foundation from there. At the core was an excellent homecare agency that sent Leila’s caregivers at the best time for her. Our local human services department contracted with the agency for its services. The homecare agency was careful about sending us women with whom my mother was familiar and comfortable. (Leila only wanted help from women; she couldn’t imagine a man--- other than her son—helping her with bathing and dressing.) The agency also provided nursing services. At times my mother qualified for Medicare-funded in-home physical therapy and we made use of this service many times to help her remain as strong and mobile as possible.

We also had a budget for hiring independent personal care assistants and gradually assembled a team that included former homecare agency aides, nursing students, reliable teenage neighbors, and mothers who worked for us during school hours and some evenings. Of course, we only hired people Leila took to. For instance, the aide who asked “Shall we do our teeth now?” didn’t make the team. Leila was not pleased with that approach.

A respite volunteer spent an evening a week with Leila most weeks of the year. She became, as did so many of the other caregivers, a valued friend. As our support network developed, I found that I no longer needed to look for additional caregivers. Network members recruited them for us. “I work with Mary Jo in another home and she is the best. She has evenings free.” Neighbors began volunteering to “stay with Leila while you get out of the house for a while.” Some brought us meals.

With this support I was able to work part-time and leave home for short periods, sometimes for most of a day. I occasionally got away for short vacations. Three days away revitalized me. At home I could now relax more of the time, get more sleep and go to dinner with friends.

It is more than 16 years since my mother passed away and I still marvel at how relaxed I could be about leaving home. Leila would be treated with tenderness and respect by any of the women who helped her. They monitored her medical condition carefully. Although Leila wasn’t able to recount specifics about her days when I was away from home, she was able to tell me (and this only happened a few times) when a caregiver had been unpleasant to her. The caregivers and I were able to discuss what had happened and to agree on other ways of handling stress or those inevitable frustrating and irritating situations that all personal assistants experience.

Once, when I was 100 miles away on a golf trip, a caregiver called to tell me she thought I should come home. Leila was asking why her sister had not returned from the grocery store. Her sister was at home in another city. Her caregiver did not dismiss this “behavior” as just another dementia episode. She handled it as she should have − as an alarming emergency − and did not hesitate to call me home. Leila was being treated for an infection. I knew it was now out of control. I had her caregiver call for a hospital ambulance.

By the time I returned home, my mother was resting comfortably in a hospital room getting the emergency treatment required by her life-threatening medical crisis. The woman who called me was one of our self-employed caregivers. Consequently, she could travel with Leila to the hospital and watch out for her wellbeing until I returned. (If her caregiver had been a home healthcare agency employee, I would not have had this option, but would probably have been able to find neighbors or another caregiver to be with her.)

In sum, my mother retained control of much of her daily life in spite of her memory disorder, frailty and occasional medical crises. Leila set her daily schedule and shared her days with those she liked and often loved. She had support to move about the community, entertain neighbors on our front porch, go to dinner with me and continue to share her wisdom with us all. The long-term care system had helped us establish a wonderful life others had not thought possible.

Some keys to self-determination for Leila Lynch:

I respected and valued Leila and modeled “how Leila should be treated.”

I was committed to helping her remain in charge of her life − committed to empowering her.

The support system also cared for and taught me. Self-determination for a person with dementia is predicated on caregiver education, support and empowerment.

Our case manager limited her involvement to the assistance we needed to gain and retain control of our lives. She left the rest to us.

Everyone in Leila’s support system valued her and looked past her illnesses and disabilities to the person. Several of her caregivers regularly reminded Leila that she was their role model for handling adversity with humour, grace and courage.

Leila was assisted to participate in daily life. She was much more than a “care recipient”. She was engaged in meaningful activities that reinforced her sense of self-worth and continuing contribution. For instance, “Leila’s girls” would ask her advice related to dating, marriage, and relationships in general. And they told her how much she helped them.

Helping Leila maintain her physical strength and mobility was a daily priority. Therapists taught her exercises using light weights. She walked, with assistance, as much as possible each day including up and down the front porch steps.

We worked hard to minimize Leila’s disorientation, frustration and fear caused by her memory disorder. (She would sometimes tell us “I feel like I am losing my mind.) We systematically helped her keep track of what was going on. Our system revolved around a large calendar that she kept at her side wherever she went, including around the house. “I see that Terry is in Madison today. Oh, good! He’ll be home for dinner.”

Leila was not treated or spoken of as an “old person”.

Advocacy for Leila revolved around removing her labels and ensuring that others − especially those responsible for her medical care − saw her as Leila Lynch and knew at least something about her life story

The support system that was originally built on provider agency services expanded to incorporate neighborhood and community resources that included paid and volunteer caregivers.

There was collective appreciation of the impact of dementia on Leila − of what it’s like to live with confusion, disorientation and memory loss.

Listening to Leila and helping her enjoy her memories was an essential aspect of our support for her. We were committed to ensuring she never heard “You already told me that.”

Leila had on-going healthcare advocacy that included my active involvement in assessing and determining treatment for her various medical issues. This healthcare advocacy extended to hospitalizations − one of the long-term care system’s Black Holes. Leila’s support network (The Campaign for Leila) went into the hospital with her. (See my essay ‘The CHF in 223?’—That’s My Mother)

Educating and advising family caregivers on preventing and managing an elder’s medical problems should be treated as a bedrock aspect of self-determination support.

One evening in the last year of Leila’s life I returned home to an experience that underscored what we had all accomplished over the past ten years. Leila, who was almost always upbeat, was in particularly high spirits. She told me, “Diane (her caregiver) always gives me a boost.” Although she couldn’t remember the specifics, it didn’t matter. The emotional lift had staying power. Diane explained that she had been feuding with her mother over a family matter. She talked to Leila about it and Leila helped her understand her mother’s point of view. Discord between mother and daughter was now a thing of the past and Diane had told Leila that afternoon how much she had done for each of them.

Diane told me “Anyone who thinks Leila is not smart just because she has trouble remembering things doesn’t know what they are talking about.”